Living as Josh Does

By Mark E. Smith

Twenty-one-year-old Josh has been an increasingly remarkable spirit in my life since I met him four years ago. I’ve never known a young person with such wisdom and insight, making our recent conversation par for the course based on Josh’s amazing character.

Josh was diagnosed in his adolescence with a very progressive form of muscular dystrophy. However, unlike many others with his prognosis, the disease didn’t progress as rapidly as usual – that is until approximately two years ago. In fact, when I first met Josh, he was still walking, using a mobility scooter for longer distances. Yet, in the last two years, the disease caught up with him, dramatically diminishing muscle tone. I’ve seen Josh go from drinking from a soda can normally, to struggling to lift it with two hands; and, I’ve seen Josh go from walking to not being able to transfer himself from a power wheelchair.

Make no mistake, the physical realities of Josh’s condition are disheartening. But, the lessons learned and the personal growth that’s resulted from his challenges have been inspiring, teaching us both invaluable lessons along the way.

Josh and I have traveled a lot together, working trade shows, summer camps, and advocacy events. We’ve lobbied the halls of Capitol Hill, and rock-starred it in Los Angeles. However, the heart of our friendship has been formed from our weekly phone calls, where every Thursday, Josh and I talk on the phone, tossing around subjects ranging from relationships to dealing with disability to music. My role is supposed to be that of mentor, but Josh has so much wisdom and is so reflective of the struggles and victories that we all face, that I often think I learn more from him than he does from me.

One of Josh’s recent victories – and a process that we talked about for many months – was his driving independently via an accessible van. After a year and a $120,000 in technology, Josh now independently drives a van with ultra-high-end hand controls that are closer to resembling those that control an airplane more so than a car. And, for his first long-distance drive this summer, he drove 3-1/2 hours to vacation at a lake where he vacationed often as a child.

When we spoke the week after his vacation, he explained to me that the trip was ultimately a realization for him: Most of the activities that he could do as a teen – boating, fishing, and so on – were no longer feasible or easily accomplished, that he realized in very real terms the progression of his condition.

I, of course, asked how he felt about his sudden realization of the progression of his condition? And, his answer was a lesson for all of us. Josh explained that what realizing how much his condition has progressed made him intimately understand is the importance of making the most of today because we don’t know what tomorrow brings.

I couldn’t have been prouder of Josh’s insight because it demonstrated a perspective that we should all live by: Being bitter or regretful of our pasts – or of what’s seemingly been lost – is pointless. Valuing our present – no matter the circumstances – is truly what it’s about.

Moving well beyond disability, think about how many of us dwell on past relationships, childhood trauma, lost jobs – you name it – where rather than accepting, healing, and evolving to live fully in the present, we just get stuck in the past. Josh could have likewise gotten caught in the past, returning home bitter as to what his condition has done. Instead, he recognized the past as just that – gone, done, over – and was even more inspired to appreciate whatever abilities that he has today. It’s kind of like rather than dwelling on how bad your past relationship was, you focus on how great the current one is – that’s how you move forward.

And, if there’s a single lesson that Josh teaches us, it’s to live in the present, simply appreciating all that we have today.